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We take to much for granted in life. Ever since Lils was born I promised myself I would never take another day for granted as long as I woke up on this side of the dirt.
For over a year we have been prisoners to our home due to lack of transportation for Lils.
Besides doctor and hospital visits my wife and daughters never leave the house.
I’ve been saving ever since I started working again to get a van and finally this past weekend I was able to surprise Julie with a wheelchair van for the family.
Day 2 and we already broke out to hit up the lake.
A beautiful day with even more beautiful girls.
So grateful to be a husband and father to my girls. I love them so much and it feels so damn good to be able to explore the world together again.
Do me a favor and maximize your experiences daily!
#chancetoinspire
This pose is everything to me. This is when my little angel is most comfortable. A good nights rest with her arm raised high. A long road ahead but living well in the present. Daddy loves you Lillian Bijou... #liftinguplils #chancetoinspire
On the bright side the attending Dr. and myself FaceTimed with our team in Cleveland to fix Lils pacer yesterday.
She is now on her diaphragmatic pacer so we are able to lower her vent settings and oxygen.
She has pooped a lot of the gas out of her gut which was pushing against her lungs so her breathing is on the up and up.
The ketamine they gave her to do the bronch has had her grinding her teeth for 48 hours. She chipped a tooth and loosened another but the grinding has finally slowed down. Because of her SCI all medications seem to have an adverse reaction or make her extra sensitive. The cervical spinal cord injury controls your whole nervous system so these drugs really play with her recovery even though they are prescribed to help.
We’re staying positive to continue to heal and break out of here soon enough.
I can’t thank you enough for the continued prayers and support. Makes all of this a bit easier on our family.
#liftinguplils #chancetoinspire
Finally got a few smiles out of my girl. We FaceTimed her Nonni and Grams and she told them how much she loves them. Her momma and sister have been the best support team anyone could ask for. In 20 minutes they will sedate her to bronch her lungs to try to eliminate the plugs and secretions to get her lung back. We woke up this morning to the x-ray being worse than yesterday so we are down to our last options as far as treatments. A bronch is when they take her trach out and send a camera with a suction down into her lungs to see exactly where the plugs are and hopefully suction them out. While they are down their they can apply Medicane directly to the affected areas to help clear things up. This isn’t a huge procedure but it does require us to leave the room to be sterile and Lils is known to drop her heart rate very low under sedation so please say an extra prayer over the next few hours. On a positive note it’s wonderful to see her eyes and that beautiful smile before another procedure. Proud of my little warrior princess!! #liftinguplils #chancetoinspire
Finally sitting this angel up in a chair for the first time in a week. Her stomach is full of gas and pushing on her lungs making it harder to breath. MRI was cancelled because the radiologist doesn’t want to scan her with her pacer wires. We changed her breathing treatments to a new regimen because her right lung keeps collapsing. One step forward and two steps back but the team is working to figure it out. We’re hoping by sitting her up and mobilizing her more that her lung will get better. If new regimen doesn’t work we will bronch her tomorrow. We’re not getting out of here anytime soon and we are all exhausted including Cha Cha but we have zero complaints. Just hoping and working toward positive outcomes. The amount of support from prayers, DM’s, balloons, cards, cookies etc... has been unreal. Our gratitude for all of you is through the roof. Lils keeps fighting so we keep fighting for her.
#liftinguplils #chancetoinspire
Let me show you my Princess Warrior a few weeks ago at home.
Every night I carry her to bed from the living room and we do neck exercises before she falls asleep.
For someone who was assumed to not be able to move she has made huge improvements with her neck, shoulders and right arm movement.
She’s so strong and resilient that she amazes me everyday.
During times like these when she has to suffer and work harder than ever to push forward.. I’m saddened for her but also reminded of how amazingly strong she truly is.
Day after day I’m blown away by her willingness to win. No matter what obstacle is put in front of her she fights to come out on the other side.
Today she is heavily medicated on seizure meds, still suctioning out a lot of blood from her lungs, ultrasound on her liver and set up an MRI for Monday to do more brain evaluations.
We aren’t getting out of the PICU anytime soon and I miss her little personality so much but we are trending in the right direction.
Life is to short for complaints, so we choose to be grateful for another day! #liftinguplils
⚠️ Warning this video is graphic and very sad!
Before our transfer to Dell, the other hospital performed some negligent procedures on Lillian’s trach causing massive amounts of blood to go down into her lungs and plug it up causing the lung to completely collapse.
After 3 days of numerous treatments we woke up to Lilly fading on us quickly this morning.
After 5 very intense hours of Pulmanary intervention we were able to suck out the bloody plug as you see in the video.
We just did an X-ray and her lung is back!!
We will monitor her close and continue with treatments but she should be able to breathe again on her home vent soon.
She has some minor infections and still monitoring her brain but with your prayers and the hands of good doctors she should be home soon enough.
Thank you 🙏🏼 everyone for the continued support through out this horrific journey.
#liftinguplils
Really wish I could write something more profound and inspiring but my mind is so cloudy. As if she hasn’t been through enough. After being rushed to the hospital at 4 am Monday morning we were met with some not so healing hands. To say the least we demanded to be transferred to a new hospital Tuesday night. This morning her chest X-Ray was the worst yet. Her right lung is completely collapsed. We’re waiting to hear if it’s fluid inside the lungs or on the outside. If it’s on the outside she will have to get chest tubes to drain the fluid. They are very painful and not guaranteed to work. Your prayers, positive vibes and kind words make all this so much more bearable and we are more grateful than you will ever know. We just want her to get back to her normal self. She’s not even opening her eyes today and is riding the vent. Prayers for healing hands and a speedy recovery. She doesn’t deserve this pain and I would do anything to take her place on this hospital bed. Picture was in the ambulance during transfer (last smile I’ve seen) #liftinguplils much love to all of you who support my little angel.
Happy Easter everyone!!!
These are just some phone pics from our little family bluebonnet day but the girls did pretty good besides Lils covering her face and Cha Cha giving the mean mug.
This was our first time to get out of the house as a family since Christmas Eve.
We always portray the best moments online but the truth is that life is not always easy. We all have our own obstacles but how we choose to get past them is what makes us better human beings. Can’t wait to get a handicap van so we can get out and explore like we’ve always loved to do.
Anyway, I hope you all have a wonderful day and thank you for the constant support for my little princess warrior.
#chancetoinspire #liftinguplils
Happy 2nd Birthday to the strongest most amazing girl I’ve ever met. If you only knew half her story it would blow your mind. It’s harder for me to post and get vulnerable the further we get away from the pain of her birth. Every time I hold her little sister I get a heavy sense of guilt that weighs on me. I only want the best for you Lillian, I will fight till my dying breath to make sure you get nothing less. Thank you for all the bday wishes to our angel today. It means the world to us. Lils says thanks as well 😉 #liftinguplils #chancetoinspire
Teamwork to make the dream work!
When you forget your step ladder you don’t make excuses, you create solutions.
Running zip tape around our perimeter opening to create a good seal before our custom window installation.
How many of my builder friends use the zip system to properly seal up their custom homes?
#amesisaustin #glassexperts
What an amazing weekend!
Months back a very inspiring young woman reached out to me through IG.
She told me that people kept telling her to follow Chance To Inspire because she had a very similar birth story to my daughter Lillian.
@rollwithalyssa and Lils both are survivors of traumatic spinal cord injuries at birth.
Both caused by the negligence of doctors and could’ve easily been prevented.
Alyssa is a beautiful person inside and out and brings so much hope to what a joyful life Lillian will have despite her physical shortcomings.
She recently got engaged to a true gentleman @jimmyzjourneyz that I feel honored to call my friend now.
After meeting them last summer they drove down from New York to Baltimore to meet Lils while in rehab. Now they scheduled for him to run the @austinmarathon today so they could visit Lillian here in Austin.
We’re so excited we were able to catch up with them and for them to meet Charlotte.
These two girls put the word ABILITY in disABILITY!
Hope you all had a great weekend as well.
#liftinguplils #chancetoinspire
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